I think that this thread brings up some good questions and I hope that I can clarify on the legislation currently being considered by Congress (I also hope to learn more about the NPF registry in the future!). The legislation would establish a national registry that would gather data from existing data sources. The Agency for Toxic Substances and Disease Registries (ATSDR) would look at a multitude of data sources, including, but not limited to, Medicare, Medicaid, private insurers, Department of Veterans Affairs, and existing registries, such as California’s or Nebraska’s.

The goal is to establish a national data collection system that would provide a more accurate picture of Parkinson’s within the US, including how many people have Parkinson’s disease. As I understand it, the information gathered will be used to better understand who gets Parkinson’s disease and what factors affect the disease. Scientists and researchers will be able to access the national data to hone in on areas where additional research is needed. The national registry, at a minimum, should help uncover and inform promising areas of research. This is expected to be an invaluable tool for researchers. For the most meaningful research to proceed, a comprehensive dataset would be much more valuable than a patchwork of piecemeal datasets of at best varying quality.

ATSDR has been working on the development of registries of this kind for several years. Through several pilot projects for amyotrophic lateral sclerosis (ALS) and multiple sclerosis (MS), the Agency has evaluated various data collection methodologies and has established that developing useful, nationwide data systems is possible for ALS, MS, and other neurological disorders, like Parkinson’s.

I hope that people will tune into the Parkinson’s Action Network Forum Webcast on February 17th to learn more about the legislation and the need for this type of national data system. The first session of the Webcast is dedicated to this topic. You can register for free and learn more**